We concluded our Global Perspectives #3 Newsletter by mentioning our October Patient Information Update. We can now report that on Saturday, October 19th, Michelle Cooper (President), Kerstyn Lane (Regional Director), Daphne Dumbrille (COO), and Heather Dow (Events and Management Plus) traveled to Halifax, Nova Scotia, to host our Update. We enjoyed a very informative and interesting presentation by a local allergist and immunologist, Dr. Pascale Clark. First, Dr. Clark explained how Shared Decision Making (SDM) between a patient and their physician ultimately leads to patients receiving the best possible care. She encouraged our members to ask themselves important questions before their next appointment so they can use the time with their physician wisely (What are my concerns? What information do I need to make good health decisions?). She continued her presentation by discussing the current HAE treatments in Canada and focused on the newest treatment to the Canadian market: Orladeyo, the first oral HAE treatment. We want to thank Dr. Clark for sharing her expertise with us on a beautiful Saturday afternoon, and we also want to thank our members, both in person and online, who joined us to learn and connect. We loved seeing members, both new and experienced, at the Update.

Knowing Dr. Clark was going to speak about SDM, we waited until after the Patient Update to share our newest instructional video. With funding from Takeda Canada, we developed a video on SDM designed to explain the merits of SDM through a conversation between one of our members, Erin, and her physician, Dr. Adil Adatia. We are very proud of this new addition to our website, so we encourage you to please visit our Resources page to watch the video.

In early November, Dr. Derek Lanoue from the University of Ottawa invited Michelle to present to his class of first-year medical students. In his lecture titled “Intelligent Advocacy in the Context of the Canadian Healthcare System,” Michelle first explained HAE as a disease and then explained why HAE Canada’s advocacy is important (to increase awareness, increase access to therapies, and address inequalities across the country). Not only was it rewarding to be able to discuss the importance of patient advocacy and why it needs to exist in Canada, but it was also an amazing opportunity to expose over 150 first-year students to HAE!

Michelle, Daphne, and Kim Speiss (Regional Director) boarded another plane to attend the Canadian Society of Allergy and Clinical Immunology (CSACI)’s Annual Scientific Meeting in Banff, Alberta, from November 7th to 9th. It was amazing to see 11 posters displaying scientific research on HAE, reminding us how fortunate we are that there are many dedicated physicians and researchers across Canada who complete very important HAE research in Canada. It was wonderful to be present at the Canadian Allergy, Asthma and Immunology Foundation (CAAIF) Gala (CSACI’s foundation) when it was announced that Dr. Adil Adatia won the CASP-CAAIF research grant. The Canadian Angioedema Scholarship Program (CASP) Foundation was founded by HAE Canada in 2019 to administer funds for HAE research in Canada. Congratulations to Dr. Adatia, who is the department head of the ACARE center in Edmonton, Alberta.

On November 14th, we held our virtual Annual General Meeting, where we voted in our 2024-2025 Board of Directors:

  • Michelle Cooper (President, Ontario Regional Director)
  • Carmen Craciun (Treasurer / Secretary)
  • Kerstyn Lane (Director at Large)
  • Martine Paquette (Quebec Regional Director)
  • Kim Speiss (Central Regional Director)

We want to acknowledge the contributions of past president Jacquie Badiou as she has completed her term on the Board of Directors. Jacquie dedicated more than 10 years to advocating for new treatments for patients with HAE in Canada as president and past president of HAE Canada, which has led Canada to have 4 effective prophylaxis treatments and 2 acute treatments approved, and many more are in the pipeline. Under her leadership, the organization and the board grew and developed to become recognized internationally as one of the leading HAE patient organizations. She fostered excellent relationships with HAEi, which has led to invaluable support and collaboration, particularly in our advocacy efforts. We want to extend a huge thank you to Jacquie for all her work and dedication to HAE Canada over the years she sat on the Board.

We are absolutely thrilled to report that the first oral preventative treatment is now available to patients living in British Columbia and Alberta. Many years of dedication and effort from BioCryst Pharmaceuticals, researchers, physicians, and patients (particularly patients who participated in the clinical trials!!) have allowed Orladeyo to become available in Canada. We are proud we played our part by providing Canada’s Drug Agency with a patient submission to support reimbursement for this treatment. Thank you to the BC and Alberta governments for being the first to make Orladeyo available to HAE patients. We are confident it will not be long before the other provinces and territories follow suit.

On November 26th and 27th, Michelle and Daphne were in Montreal, Quebec, to attend a conference titled Teaching Pigs to Fly… or How to Leverage $1.5B Rare Disease Drug Strategy into Value-Based Comprehensive Rare Disease Plan. The conference was co-hosted by the Canadian Organization for Rare Disorders (CORD) and Quebec based organizaiton Regroupement québécois des maladies orphelines (RQMO). The conference focused on how Canada can get a value-based return on the $1.5 Billion that is dedicated to the National Rare Disease Drug Strategy. The conference made it clear that the money cannot be spent only on treatments for rare diseases but rather on many aspects of care, such as science, research, registries, and diagnostic tools to speed up diagnosis and drug access. It was a very informative conference, and we are grateful that CORD is working hard for all Canadians with a rare disease.

To end this final newsletter of 2024, we’ve been asked to share our highlights and our hopes for 2025.

Our highlights from this past year:

  • Attending 2 of HAEi’s 2024 conferences: the 2024 HAEi Regional Conference AMERICAS in Panama and the 2024 HAEi Global Leadership Workshop and ACARE Global Angioedema Forum 2024 in Denmark. It was amazing to learn about new therapies to treat HAE and effective methods to attract new members, connect with HAE communities in countries around the world, and discover how others are raising awareness of HAE.
  • Reimbursement for ORLADEYO has been achieved in two provinces so far!
  • Successful light-up campaign for HAE Day of the CN tower in Toronto

Our hopes for advocacy and people with HAE in Canada 2025:

  • Access to modern medicine for all types of HAE in Canada, including pediatric patients
  • Achieve a positive review from Canada’s Drug Agency to extend access to and reimbursement for people with HAE with Normal C1-INH to icatibant therapy (final recommendation decision is pending)
  • Increase awareness of HAE through media and events
  • Easier ways for diagnosis and access to treatment for ALL HAE types
  • Updated emergency resources
  • More therapies approved for reimbursement in Canada
  • All provinces sign agreements for reimbursement of Orladeyo and for icatibant for nC1-0INH patients
  • Publication of an article based on our National Report Card data since 2017
  • Attend HAEA summit in July

We want to wish everyone happy holidays, and we hope everyone will have the opportunity to spend some quality time with loved ones.